Hello. I'm still suffering from a bit of mucositis but I'm confused.
Are ropey salvia and mucositis related? Is ropey salvia a symptom of mucositis?
And of all the posts I've read almost no one has said how long the ropey/thick salvia lasts. I know everyone is different but mentioning your own time frame can really give someone hope.
I NEED to go back to work the 25th of July. If I can't talk I can't go back. If I can't go back the 25th of July I won't have a job to go back to. And if that happens I know I won't want to get up ever again. I love my job.
So please, how long before the ropey salvia cleared up for you? Is it related to mucositis?

John of Arc

It is confusing on the forum when the majority of people confuse mucositis with excess mucous and ropey saliva so they post about one when they really mean the other. I did it at first. Now to your questions.
1 [quote]Are ropey salvia and mucositis related?[/quote] Depends upon your definition of "related". Both ropey thick saliva and mucositis are caused by the same thing: radiation damage so in that broad general sense, they are related. But related in terms of causality, no. Mucositis means mouth sores caused by radiation damage to the mucous tissues of the mouth and does not cause the ropey saliva which is caused by radiation damage to the salivary glands. Neither one causes the other.
2 [quote]Is ropey salvia a symptom of mucositis?[/quote] No, Ropey saliva is not a symptom of mucositis any more than fatigue or nausea or any of the other "related" damages caused by radiation are symptoms of mucositis.
3. [quote]how long before the ropey salvia cleared up for you?[/quote]
My first time, the ropey saliva cleared up in a month.
The second time, with the salvage surgery and radiation in excess of the maximum, about 3 months during which I used a suction machine daily and at night it was so thick.

Remember, you are young, I was old. Your times should be better. Worse case, practice spitting now into one of the those large coffee carry mugs, and you will be able to talk even with the saliva. Or at least I was able to
Charm

Did the ropey salvia make it difficult for you to speak?

Yes, the ropey saliva did make it more difficult to speak but not impossible. I used cans of seltzer water (some people prefer club soda which is seltzer water with potassium salt or other salt added - but don't confuse them with tonic water which burns due to the quinine)to cut thru the thickness, then I would rinse and spit out enough to talk. I carried a large coffee travel mug to spit into and kept a larger cylrindical cooler in my office to empty the mug into until I could dump the whole mess down a toilet (too thick for the sinks).
Consider renting a suction machine, its usually covered by insurance, which sucks the saliva right out. I did not do that until the second time but it was very effective.
You have over a month before July 25th, it will get better.
Charm

My thick stuff lasted about 2 weeks but seemed like much longer. I carried a small styrofoam cup IN MY POCKET and spit in it whenever I needed to which was constantly. At night I would wake up with a mouth full and would run to the B/R sink. Sometimes it triggered a gag reflex and I would vomit. It will go away but will leave dry mouth in it's place so on one hand enjoy the excess now because when the DM takes over you will be carryinf a water bottle instead of a cup.

See carrying a water bottle is normal for me. That won't bother me a bit

Then you already have that going for you! I "learned" the hard way to keep many extra bottles in my car because just about everytime I took on into a store I left it somewhere and didn't usually realize it until I was driving away and believe me (this is the hard way) there is no way I could make it 1 mile without needing a sip.

Yeah. I carry a nalgene bottle with me everywhere and have for years. It holds a lot of water and is hard to forget.

John,
You are correct that we are all so different. I did not have the ropey thick saliva, although I had an annoying drainage from somewhere--maybe the parotids--that went on so long I was not sure exactly when it ended. It just seemed a part of me. I think it was nearly a year after finishing rads & chemo. BUT, I did go back to work in the time frame you are mentioning, and I use my voice a lot in school. I was lucky in that I had teachers donating me sick days so I could take some time off if I needed it. I couldn't have done any job, but I'm an old lady compared to you! I think you're time frame is reasonable provided you can find a way to rest if you need it, even if it means you don't do anything in the evenings for a while.
Best,
Anne

I'm just so scared. If I don't go back by then I will not have a job to go back to. And then my life gets turned upside down again and I lose even more.

I also think the time frame sounds realistic.
I think that you should get a calendar or journal, and each and every day between now July 25 do something to help you prepare for work. As I see it, you need nutrition, physical activity, rest, and some sort of mental stimulation - puzzles puzzles or reading, maybe. If you note your accomplishments at the end of each days you will begin to see improvement as you do more.

Be of good faith! You have already accomplished much by completing your treatment. It's a long journey back to health but you are past the worst of it!

Hi John of arc.

Just to share my thoughts and experience.

1. My "mucous" (defined from me to you as thick snot that was green / red / beige in color)last almost 2 months. I am 49 and was always in good health (other than being heavy set). I was Base of Tongue stage III with one lymph node involved. I had radiation and Erbitux for treatment, nothing else.

2. I was told to swallow as much and often as I could and to no spit if I could help it (even though I looked at my "swallowing therapist" like she had three heads, she stuck by her statement to swallow even the mucous if possible. It was not possible most of the time, and I did not most of the time, but I did try.


3. It will end

4. I never had to apply for SSI but I am told that head and neck cancer patients do have a "fast track" for approval up to 16 months (if that is needed). When I check on it (just in case) I was told I would get a monthly check as well as each of my children. I share this not to insult your desire to work, but only in the event you take longer to recover and find your fear realized about work. I took a 2 month leave of absence from my employer but was not able to return until the 3rd month, fortunately for me my employer told me he would hold my job as long as I needed, and he did. I can't be sure of the exact details on approval, and I was told the waiting period is still 6 months from date of last work..so the SSI lady encouraged me to apply asap and if needed I could always reopen the application, but this way most of the doctors records and all the paperwork would be on file. But in full disclosure I never did "pull the trigger" and I was back at work in 3 months, but not fully able to perform as I had previously for another 2 months after that.

My last radiation was January 20th 2012.

Best to you !!!

Tim6003

As a side note, I never had a suction machine, but have heard others who did and had great experience with it.

Best to you...hang in there...you are not alone.

I guess my main worry isn't money. I'm on temporary disability now. My main concern is losing my job. I love my job. And it took me years to find a job I liked working at again. If I don't go back to work by the 25th of July I will no longer have a job
But as I was watching a Kylie Minogue concert last night (one of my favorite singers and a breast cancer survivor) something dawned on me. I've heard a few people say they use seltzer water to get rid of the extra salvia and swallow it. If I could do that it wouldn't matter if I still had the extra spit because I could get rid of it without having to spit it out in front of children. And I could boil it down to only talking when I had to.
Hopefully I won't need to cross this bridge. It means a lot to hear some of you guys say that my time frame sounds reasonable. Hopefully a miracle will take place and I'll wake up and my mouth will be dry. The dry mouth I'm prepared to deal with. Before all of this happened I drank water like it was going out of style. At least 5 or 6 full nalgene bottles a day (which are 32oz each). No adjustment will be needed in the way of water. But...maybe if I can't go back to work I'll take that as the opprotunity to find a new niche in life. I've been teaching preschool and working in the child care field for 8 years. And I've always wanted to do hair and make up. Maybe if I can't go back to work, lose my job, and have disability I can go to beauty school.
One way or the other my life is not going to be over. I just hope a miracle happens.

Hey John,

As you've heard many times we all heal at different rates. In my case the mucus stopped right at 8 weeks post treatment. It started to slow down some just before that. I started to sleep through the night and had to only occasionally hack up some stuff. I could talk ok as long as I kept a water bottle handy. Before that talking was out of the question. I'm now 12 weeks post treatment and puking and hacking are all but a distant memerory. Talking is much better. My voice is raspy and must keep the water handy. I always have three things on me, 1. Water bottle 2. Blistex lip infusion (liquid chap stick with a roller ball) 3. Biotene mouth spray. The mouth spray really helps with the dry mouth. How is your energy and eating going?

Good luck

My energy level is slowly coming back. I've taken some great suggestions off here and from other places to try and curb the fatigue because it became unbearable last week. I slept all but 4 hours that day. I've started walking around the house for at least 10 minutes a day and making extra trips up and down the stairs to my room. I've been going more places and stating out later with my mom. Like yesterday. We were suppose to go grocery shopping and left at 2 and ended up going to visit my grandmother's grave, then happened upon this awesome antique store that we got wrapped up in and I found an amazing amount of rare records then we ended up at lowes and didn't end up shopping until 5. A few weeks ago I know I couldn't have managed that. Especially without getting cranky.
For food I can still only tolerate the boost shakes which is fine. My losing weight has mostly stopped. And I'm at a place now where I can almost drink water like I use to.
If this thick salvia would just clear up and I could talk everything would fall into place. I just want to say to whatever higher power there may be "I'm not even asking to have everything back the way it was. Just let me be able to speak without difficulty or pain"

Well hang in there John...I pray your healing will be fast and you will be able to go back to work. It's great you have a job you love ...

Best,

Tim

Hi, John - it really sounds like you are making good progress. I am especially glad to hear your enthusiasm about the antique store with the records

When you feel ready for it, I will give you some suggestions on making your own protein shakes!

Keep up the good work and remember to keep getting enough sleep.

Maria

Still having some rough days. No improvement in the salvia department. Which gives even more fuel to the voice inside my head that is saying "this is it. Your life Is officially worthless. This is how it is for the rest of your life". And the 25th is looming over me like a dark shadow. I guess I'm on the edge and I won't be satisfied until I end up on one side or the other.

Jon no one can tell you how long it will take you to heal or what you will be left with 3 years from now (people still find improvement years out) everyone is individual. I could tell you that by week 3 I was feeling better, I could also tell you that by may 19 - I was drinking without pain, and able to talk, I also had my peg removed (2 weeks after radiation finished) but none of that information will help you because we are all individuals, heal differently, have had different drs. And despite the treatments being the same, location of tumors, their size, overall health of the person, and genetics etc.. All play a role in where the treatment (radiation) is aimed and how you will heal, and any long term damage. There are somethings that may never improve, but usually for most these are few to non existent. No one here who has responded to you, hasn't tried to help, as far as I've read they've all tried to answer your questions, and they are pretty much all saying the same thing, we honestly can't tell you the when's or what's - despite most of us having been through the same or similar treatment, we all respond differently, and there are many other factors. why do you think your dr. Can't answer the same questions? Because they don't know either. We're here to help you try and deal with some of the side effects of what you've gone through because we've all tried different things and know what has worked for us, but it's a crap shoot for the most part. An example - I was fine during chemo - no problems. I lost 22 lbs through radiation. A friend had the same treatment, & same dr. He puked his guts out for the entire 6 weeks and lost 70 lbs. we're all different. Everyone is entitled to a dark day, or week or month, but usually the best way - I find to deal with situations is do something about it. Kudos for pushing through it.

Hey John of Arc, I pray you went back to work despite mucous. I am in the same boat. My last rad treatment was 10 July. It was then the mucous really started to develop. I was hacking up phlegm balls every 5-10 minutes (or else swallowing them). I also got a suction machine which made it easier to remove from my mouth. I did not have to hack it up which hurt a lot. Today is three weeks post last treatment and mucus is almost all gone. I still have a little, but not as large volume as earlier. I hope this helps for comparison. I hope you are ok with your employment. I am working towards going back to work in a few weeks.

Ken